POTS…

Well, it seems as though i may have “POTS” (Postural Orthostatic Tachycardia Syndrome). There is a good website here that explains what it is, click on the links under “POTS place” on the left hand side…

I have been taking part in a research study about CFS/ME and Orthostatic Intolerance and have been to the hospital three times in the last month where i have been monitored (heart rate, blood flow, pressure etc) while lying down for ten minutes, then standing for two minutes. It seems that when i stand, my heart beats very fast to try to deal with becoming upright, which it seems my body does not do very well. The specialist asked me if i would be prepared to see her as a patient as there a number of drugs that she can try to manage the problem (it can’t be “fixed” as it is a problem of my autonomic nervous system, as CFS/ME is as well) and maybe (maybe) make me feel a bit better… which would be nice as i have been feeling pretty awful recently and it feels as if things have been just getting gradually worse and worse over the last couple of years or more that i have been off work.

I have been having problems with dizziness and feeling lightheaded and weak, particularly when i stand up, but at other times too (sometimes when sitting still), since i was still at work, and it has been a major problem for a long time. I find it very hard to stand for any length of time, which rules out things like waiting at a bus stop (even if there is a “seat” to perch on as you are still almost standing), i can’t queue in shops and even walking in general is pretty hard. If i bring on a “funny turn” in this way, i have to get home and to bed as soon as possible as i feel so awful, just lose all power and energy. Even when i don’t feel dizzy as such, i find it very tiring and hard work, and feel generally weak and lightheaded. I find it hard (and often impossible) to go anywhere or do anything much, basically. My doctor advised me to drink isotonic drinks and eat more salt, and said she didn’t think i needed to see a specialist as although my blood pressure drops a bit when i stand, she thought it was mild… “I just think your ME is quite bad at the moment”. Hmm yes… but why, Doc?

So that is partly why i signed up for the research study, and now i am glad i did, but i also feel that i should not have had to… apparently this condition is common in people with ME, so why has it taken so long for someone to notice? Maybe as it is difficult to treat and not life threatening they don’t bother… all the same it seems it can be very debilitating and any improvement that can be made would be most welcome. I don’t like taking medication and am a little concerned about what i will be taking, and if i will take it permanently, but life has been very limited and anything that can make everyday things a bit more possible or less exhausting would be nice. I am trying not to get my hopes up, of course…

In ten years of illness, this is the first time a physical test has come back as abnormal. I wish i had had this early on so that i would have had something to wave at the people who said it was all psychological (the insurance company, in particular, i am looking forward to telling them!). Maybe i am getting ahead of myself, i have no piece of paper to wave or even appointment with the specialist as yet! But in the couple of minutes she spent with me she seemed to be speaking as if she thinks i have it. Reading about it certainly rings true, especially now that i know what my heart is doing. She asked me if i ever noticed my heart beating fast when i stand up, i said no! It is not pounding away heavily or anything, just faster, and who knows what is normal without actually focussing on it. I have noticed it, but mostly when lying down, i think just because it is quiet, maybe the pressure on my pulse of the pillow etc etc. maybe it takes a while to calm down/recover to a normal rate after lying down…

Since i got home from the hospital, i stood up against the wall and took my pulse for 15 seconds after one minute of standing: 31 beats (124 beats/min), then i took it after 5 minutes and it was still 29 beats (116), so it obviously does not just happen when i first stand, but continues for a while… i rarely can stand for much longer than that anyway! Over 120 beats per minute is tachycardic apparently, so when i initially stand it is over that, over 100 beats per minute is still seen as abnormal. Even though i knew there was something wrong, it was quite a shock to know that my heart is doing that. Now i know it is, it seems so obvious and i notice it a lot, although i am trying to ignore it!

I am a little confused about the diagnosis, as the symptoms, likely causes etc are so similar to ME, that there must be connections. Do i even have CFS/ME? I think so, as i am not sure that i have had POTS for the last ten years… it has maybe just developed over time or become bad enough to qualify as “POTS” but maybe have had issues in this department throughout the illness? Who knows. The lightheadedness and dizziness i think has never been as bad before as in the last couple of years, but has been present at times. This website speaks a bit about the connection…

Chronic Fatigue Syndrome (CFS), also known as Chronic Fatigue Immune Dysfunction Syndrome (CFIDS), is somewhat related to POTS, at least in terms of a similarity of many of the secondary symptoms. In Europe CFS is called myalgic encephalomyelitis (ME). Orthostatic intolerance, a broad title for blood pressure abnormalities such as neurally mediated hypotension (NMH) and POTS, is a common symptom of some types of CFS. Neurally mediated hypotension refers to patients who get lightheaded when standing due to a defect in their nervous system’s regulation of blood pressure. Patients do not need to develop tachycardia to qualify for a diagnosis of NMH. The Center for Disease Control now estimates that over 1,000,000. Americans have CFS. Various studies suggest that more than one 100,000. Americans have POTS. Some percentage of patients have both POTS and CFS. The Center for Disease Control has found at least four distinct forms of CFS, and that some forms of CFS cause abnormal heart rate and blood pressure issues (POTS and NMH) while others do not.

Well, who knows… i look forward to having some questions answered when i get my appointment through. I hope it is soon.

Maybe this “new evidence” will help my DLA appeal as well… fingers crossed!

Meta

10 comments

Well it’s not good news to have POTS but it’s brilliant that a doctor asked to treat you. Asked YOU.

I think you’re right that there is probably a lot that could be done to help manage symptoms better in ME to give better quality of life but it’s complex and GP’s are not equipped (or often even interested) in helping. That’s why specialists ME centres are such good news – if only we could be certain of having symptoms treated instead of just having group therapy, CBT and GET. I am going off topic now …

I don’t know much about POTS so am interested to learn more through you as you discover more.

Certainly sounds like promising supporting evidence for DLA. Might be worth seeing if that doc will write a letter confirming diagnosis if you have to wait for an appointment. And to include extracts from your DLA (eg. even with a perching stool I could not prepare vegetables or cook with hot pans as my POTS causes terrible dizziness when sitting in this position.

Thanks Rachel! Yes, i am pleased to be getting some actual medical attention!

I have to send some stuff to the hospital for the study, so i am going to write a letter to include, asking that the abnormal findings be passed on to the CFS/ME specialist (who is in same hospital) that i will be seeing in a month’s time, so that he can include it in his report for DLA if i have not seen this new specialist beforehand. I think it is really helpful as so many of my problems with standing, walking, bending, lifting, sitting upright, raising arms to wash hair, headaches and even tiredness have an explanation backed up with actual evidence! How refreshing! Much easier to explain things now, as in your perching stool example! Will make my specialist report about CFS/ME more specific, as i have proof now that things have become severe and i don’t feel i now have to convince him as well.

It’s not really relevant to DLA but i have real trouble with my eyes tiring very quickly, and having muscular aches in them after very little time of staring at something, difficulty focussing etc and the optician cannot find anything wrong and this is also a symptom of pots! It’s nice to join some dots…

Crossing everything that this diagnosis improves things on health and benefits fronts… about time something went my way i think? Trying not to get my hopes up on any front, but yes, a little ray of hope!

It is great to have the recognition and the offer of treatment. This way, you can have some treatment and the support you deserve.
I’m very happy for you.
I’m also interested in ME/CFS specialist and what he would offer. With my case, it is a team work with my GP to find out or explore treatments. Although I enjoy the personalised process, sometimes I feel it would be nice to be given magic pill/treatment.
Please keep up informed. And I’m wishing the best outcome from DLA appeal.

Yes they are offering treatment but who knows if it will make much difference, i am just trying to wait and see… i think it could be a long process of trying different things, navigating side effects etc.

The ME/CFS Specialist is not as exciting as he sounds… i have seen him before and he has no magic pills or actual treatments! He offers a Lifestyle Management Group where i learnt about pacing, sleep, dealing with emotions/stress, diet, etc etc. I did not learn much and had to attend two hour sessions every fortnight in a hot and crowded room and it was a nightmare. I could not even attend now, so not very accessible for more severe sufferers… He does check you out and looks out for alternatve diagnosis to ME, which is useful, but beyond that, quite limited as far as i can tell, which is why i have not been rushing back to him before now! He cares, but is just bound by the fact that there is little to be done, particularly within the constraints of the NICE guidelines and NHS funds i think…

I had dreadful POTS when I was first diagnosed…terrifying stuff sometimes. I even got to the stage where I had to crawl from one spot to another rather than try to stand up and walk. I still find it very hard to stand still for long and hate queues etc. —- all the things you mentioned really — but I rarely have the frightening feeling that I’ll keel over in the street or the middle of the road anymore.

My GP suggested drugs, elastic stockings but actually what helped me (didn’t cure but helped greatly) was an increase in salt intake, cranial osteopathy and some herbal remedies which were specifically prescribed and made up for me by a qualified herbailst (i.e not just some stuff bought from Holland and Barrett). I think it’s the Gingko and ginseng that helps but there’s othe stuff in the mix too and at least I donlt have to wear elastic stockings like some old lady in surgical stockings — what next ? a zimmer frame and a pot for my dentures ?

If you talk to osteopaths you find that they often take the view that there is some commonality in the posture of PWME and that can affect things like blood flow. Cranial osteopathy (if you don’t know already) is NOT being pulled about and manhandled but incredibly gentle, almost imperceptible manipualtion of the bones in your skull. It’s vey gentle and vey powerful.

Just thought I’d add my two pennorth for a more alternative route.

Whatever you do I hope you’re able to find some relief form the POTS – no one knows how horrible its is until they’ve had it

I am trying to eat more salt – soya sauce and marmite are good sources i think, and tasty too.

I read somewhere else that cranial osteopathy can help, I may give it a try, if i can find one i can get to easily. Home visit would be nice but I don’t expect it’s possible! I did have it many years ago when i was first ill(and lived in another city so can’t go back to him), and although it seemed so gentle i doubted it was doing anything, i did improve at that time, or shortly afterwards so maybe it is worth another go…

I have not had my initial consultation about POTS yet with the specialist, so will see what she suggests/thinks. Hope i don’t have to wait too long as feeling so bad currently…

Glad you are not as bad as you were, thanks for the advice! I have not read you blog for ages, will get over there asap 😉 bye for now.

Well cranial ost is very subtle. When I was first ill (or diagnosed atleast) I was amazed that something seemingly so gentle was so powerful to the extent that at first I couldn’t tolerate it –just too much and my whole system was too frail and out of whack. In fact just getting ti the osteopath (which is only 10 minutes drive) was too much. But after a while (6 months) that was possible and the teratment really helped. They may do home visits — worth asking, cos mine do.